‘What does love look like? It has the hands to help others. It has the feet to hasten to the poor and needy. It has eyes to see misery and want. It has the ears to hear the sighs and sorrows of men …… That is what love looks like.’ - St. Augustine

Wednesday, November 04, 2009

Times are Tough

I'm sorry I'm not posting much these days. Life has thrown us more than our share of curve balls and I'm too busy batting at them to blog much. I wish I knew why some of us seem to get the lion's share of challenges. I wish I could better face them with grace and courage. I'm hanging in there, but I really feel ill-equipped.

My daughter had a migraine-induced stroke about 6 weeks ago. That alone would send any parent into a tail-spin. We have a great neurologist so I feel "taken care of" in that respect, but dealing with the side effects of her meds is tough. She has been diagnosed with something called Familial Hemiplegic Migraine disease. I'm still in the learning phase so there's not much I can tell you about it that you can't just find yourself via google.

I'm in the process of seeing too many doctors to mention as they try to figure out what is causing all my troublesome health issues. I know what it is, but you know it sometimes takes lots of testing for the doctors themselves to believe you. My primary care doctor thinks they are all separate health issues caused by everything from sleep apnea to peri-menopause, but I know in my heart they are all simply symptoms of my worsening auto immune disease. What else accounts for it? If you are a "medical detective" and want to weigh in on what you think, feel free. I'll take all the input I can get as I try to figure this all out. I know this list may sound incredible, but I promise you this is exactly what I am experiencing day to day, and trying, trying so hard to live with:

1. Chronic and extreme exhaustion (daily)
2. reactive arthritis ( daily with varying degrees of pain.) It tends to be in my lower spine and right hip mostly, but can flare up in my neck and legs from time to time.
3. low-grade fever ( my pc tells me this is normal..huh?? Is it normal to have your temp 99.9 for weeks at a time, and then drop to 97.2 for a day and then up again?)
4. Worsening food allergies. ( Now life threatening allergy to all soy, and new allergy to wheat, rye, barley and oats)
5. mouth sores and swollen gums every few days. ( makes it impossible to eat.)
6. chronic joint pain and swelling.
7. chronic diarrhea ( EVERY day. not kidding.)
8. Strange rashes that come and go. ( ended up in the ER with shingles 2 weeks ago, too)
9. tops of fingers turning blue even when not cold (daily)
10. Nightly leg cramps/ charlie horses that wake me up.
11. trouble swallowing. ( Sometimes I cannot make myself swallow...very weird sensation.)
12. Hives on and off.
13. break-thru menstrual bleeding...but heavy, heavy blood loss. And I've been on trynoranil for years for PCOS. NEVER had this bleeding.)
14. daily nosebleeds that come out of nowhere.
15. shortness of breath with little exertion.

The worst is the fatigue. I have never experienced anything like it. Ever. It reminds me of when I had mono in high school. you know that level of exhaustion? Where you can manage an hour or two of being up, and then you have to sleep? That's what it's like. My PC would tell you it's sleep apnea or depression, but I know my own body. I am not depressed, in fact I am the opposite. I'm rageful over all of this. I want to be working more and doing more, and mu body won't let me! And I'm sorry, but sleep apnea could never cause this level of exhaustion. It is completely debilitating.

So, over the next few weeks I will endure a sleep study, a colonoscopy, and more bloodwork as my PC tries to prove her point. I finally called an immunologist myself and made an appointment for later this month. What else would account for all these symptoms and their sudden onset?

Well, I have to head back to work now. ( I'm on break.) Please let me know what you think, and if you are the praying kind, I'd be so grateful for your prayers. I hate to say it, but I'm losing faith in prayer after months and months of praying with no relief. I feel like I am in over my head. Where is God in all of this? He is silent, and I am scared.